Research Study on Genetic Testing Looking for Survey Participants

The Celiac Disease Center at Columbia University invites you to participate in a research study looking at individuals’ knowledge of genetic testing of celiac disease and their potential concerns with such testing. The goal of this study is to increase understanding of the factors associated with making an informed decision regarding such testing and to better provide the necessary information to make such a decision.

A brief survey has been developed to address some of these factors. The survey only takes five minutes to complete, it is anonymous, and no identifying information is collected.

If you or a family member has celiac disease or gluten sensitivity, please consider completing this online research survey.

This Examiner is a firm believer in genetic testing and had her daughter’s genetic testing done at an early age. The testing isn’t intrusive and we wanted to be informed and prepared. As a parent, we needed to know if this Examiner has passed on the gene to our child, which could lead to a development of Celiac Disease down the road.

Good afternoon, my name is Andréia Jeany Martins Simplicio, 22 years old, Brazilian, I have graduated recently in pharmacy. I found was Celiac when I was about 12 years old, but I already had presented intolerance since my first contact with gluten, still when I was a baby (more or less 3 months old). My mom presented had “pre eclampsia” with six months and half of gestation, then, it had to be discontinued and I was born premature, so I didn’t have enough strength to suck the maternal milk, even putting it in a bottle I didn’t suck. Relatives and doctors found others healthy ways to feed me, but I resisted most of them, so it began a differentiated feed alternating flavors: milk + banana, milk + apple, milk + papaya, milk + strawberry, milk + CHOCOLATE. The chocolate indicated by my pediatrician with nutrients needed for a baby, wasn’t gluten – free, so I presented a terrible diarrhea, since this day, I began to lose more weight than winning, had growth retardation, had also constantly rashes on my skin, which now we know it is more a symptom of celiac disease called dermatitis herpetiformis, constant abdominal pain, abdominal distention, including the traditional diarrhea an so on. Another interesting factor is that I have the level of IgA antibodies in my body almost zero, the quantity existing in me today is comparable to the amount that there is in a baby (6 to 8 months old), so I’ve always been exposed to several infections. Currently, with 22 years old. I have about 1,33 meters of height and 30 Kg. Always lived together with celiac disease’s classics symptoms, I had been consulted by many doctors and made several medical examination, but, only at 12 years old, when I was in the highest degree of my resistance, we discovered that I am celiac… That is a long history. So long, Andréia.